Dearest Friends,
We have not posted an update since the first few days of Theofanis' second Stem Cell Transplant because our full attention has been directed towards our son's health and well being. On Day -5 of the transplant, which was his third day of high dose chemotherapy, we discovered that the doctors and hospital made a terrible, horrible, inexcusable mistake. The unthinkable happened. Theofanis was being given an incorrect dosage of chemotherapy. He was being overdosed.
He was being given chemotherapy per the protocol for a Single Stem Cell Transplant. The protocol for a Tandem Stem Cell Transplant (which he should have been getting) utilizes the same drugs as in a single transplant, but at lower dosages for each of the three drugs. If you recall, Theofanis is the first child at Comer to undergo a Tandem Stem Cell Transplant as part of the current Neuroblastoma clinical trial. When we, not the doctors, discovered that he was being overdosed, Theofanis already received too much of the one drug, Melphalan. The other two drugs were adjusted on the last day so that he cumulatively received the proper dosage. When the doctors and hospital took full responsibility for this unbelievable mistake, we were scared, angry, dismayed, appalled, etc., etc., etc.
We will soon post all the details of how we discovered that this mistake happened, how they corrected some of it, the short and long-term effects on Theofanis, and what the doctors and hospital are doing to regain our trust.
But, the most important thing right now is Theofanis' recovery. Theofanis did receive his "super cells" back on day Zero (last Wednesday). Like before, the actual stem cell rescue went well. His body seemed to once again welcome them back with open arms. However, the side-effects of the chemotherapy started sooner: his pain is much more intense; his mucositis continues to worsen and he cannot swallow nor eat; he is having bad side effects such as itching from the pain medicine he is on; he has had nearly daily platelet transfusions; his heart rate shot up (but now is under control and confirmed by the many EKGs he's taken); and he has a urinary tract infection which is unbearable for him. (This is Theofanis' first ever infection since he started treament.) They are still monitoring the virus he has, too. Theofanis feels and looks miserable. He says he's having a tougher time now than during the first. It breaks our hearts to watch our son go through this. We so desperately wish it was us instead of him.
Theofanis is right, this is more difficult than the first transplant. And, there is still no sign of his counts recovering. And the hope we had that Theofanis will be able to celebrate Christmas and his birthday with his mom, dad and sisters is slowly starting to fade.
But, we must and will continue to believe in miracles. And from the very begining our hearts told us that "With Love, Faith and Prayer He Will Win!" So, we ask that you all pray with us (and we know that you all pray for Theofanis every day) that his white blood cells and neutrophils suddenly appear during his next blood test and then sky-rocket from there.
And please pray with us that the mistake the doctors made will one day prove to be what cures him of his cancer. Because WHY, WHY, WHY on the third day of chemo did Eleni feel that something was not right when nothing was different than the previous two days? What came over her to say, "Stop, something feels wrong." So, please God, our almighty and just God, please let it have been you, placing your hand upon us and telling us that Theofanis got the medicine he needed, and not one drop more.
With all our humble love and gratitude for your prayers,
Eleni and Kosta
Wednesday, December 21, 2011
Friday, December 9, 2011
Day -6 of Stem Cell Transplant #2
Theo's chemotherapy on Day -6 started in the morning:
- Melphalan, 20 minute IV push (and administered with a red popscicle stick)
- Etoposide, 24 hour IV infusion
- Carboplatinum, 24 hour IV infusion
He kept up great with his mouth care throughout the day. His nausea was well under control, too. His appetite slowed down and he often said, "I'm just not hungry." Though, he was open to having lasagne for dinner (Stouffer's frozen), but when he tasted it and realized it wasn't anything like mom's, he opted for some cereal instead.
He had visits from all the top docs, too. Dr. Cunningham came by to talk football and Dr. Cohn came by to once again affirm that she's proud of him for doing so great! She also told us that she's on-call on Christmas Day, and that if hes's still hospitalized, there's a chance that she may make an exception or two to let him celebrate his birthday with his sisters...possibly. That news made everyone smile!
p.s. Theofanis sneezed five times today.
He had visits from all the top docs, too. Dr. Cunningham came by to talk football and Dr. Cohn came by to once again affirm that she's proud of him for doing so great! She also told us that she's on-call on Christmas Day, and that if hes's still hospitalized, there's a chance that she may make an exception or two to let him celebrate his birthday with his sisters...possibly. That news made everyone smile!
p.s. Theofanis sneezed five times today.
Wednesday, December 7, 2011
Day -7 of Stem Cell Transplant #2
On Tuesday, December 6th, Theo began his stay in Room 637 for his second Stem Cell Transplant. And on Wednesday morning, his treatment began as planned for Day -7.
Theo is the first child at the University of Chicago to do a tandem stem cell transplant as part of the COG Neuroblastoma Clinical Trial ANBL0532. Researchers are trying to prove (or disprove) that two transplants are better than one. By participating in this clinical trial, Theo hopefully will be helping future children improve their chances of overcoming this cancer. And, most critically, we are all praying that this second transplant will permanently wipe out every single microscopic cancer cell that's lurking in him.
Theo woke up to a festive array of holiday decorations that is covering nearly every surface of his hospital room. He and his sisters (with mom and dad) set up his Christmas-inspired room with garland, snowflakes, santas, photos, and holiday/birthday messages from his friends and schoolmates from Pythagoras and Marion Jordan. There are even stacks of handmade cards filled with good wishes from kids Theo has never met before...kids from his cousin Sofia's school, Jay Stream Middle School, and kids from Saint Spyridon, a Greek Orthodox Church in Palos Heights who also sponsored a fundraiser for Theofanis. He has a handmade winter blanket given to him by his classmate Reagan, too. Theo's hospital room would not be complete without Legos...a Star Wars Advent Calendar is his count down to Christmas and his birthday.
Theo is the first child at the University of Chicago to do a tandem stem cell transplant as part of the COG Neuroblastoma Clinical Trial ANBL0532. Researchers are trying to prove (or disprove) that two transplants are better than one. By participating in this clinical trial, Theo hopefully will be helping future children improve their chances of overcoming this cancer. And, most critically, we are all praying that this second transplant will permanently wipe out every single microscopic cancer cell that's lurking in him.
Theo woke up to a festive array of holiday decorations that is covering nearly every surface of his hospital room. He and his sisters (with mom and dad) set up his Christmas-inspired room with garland, snowflakes, santas, photos, and holiday/birthday messages from his friends and schoolmates from Pythagoras and Marion Jordan. There are even stacks of handmade cards filled with good wishes from kids Theo has never met before...kids from his cousin Sofia's school, Jay Stream Middle School, and kids from Saint Spyridon, a Greek Orthodox Church in Palos Heights who also sponsored a fundraiser for Theofanis. He has a handmade winter blanket given to him by his classmate Reagan, too. Theo's hospital room would not be complete without Legos...a Star Wars Advent Calendar is his count down to Christmas and his birthday.
Oh, and of course, there's his Christmas Tree adorned with multi-colored lights, holiday and sports-themed ornaments, and topped with a Blue Jay, Marion Jordan's mascot, which was given to him by Mrs. Grosch. Like before, the staff at Comer told him that he has the best room in the hospital! For a tour of Theo's hospital room, click on the YouTube link: http://youtu.be/wfOr1YrPoZA
In the morning, the nurses and doctors started to filter in and out of the room with the day's medicinal plan. Overnight blood work came back looking good. His CAT scans from the previous week looked good, too. And, with news of good test results that confirmed normal kidney function (negating a slight scare the Yianas' had earlier in the week), Theo's body was ready for the high dose chemo and stem cell rescue. A small surprise, though, put the staff on alert. Theo tested positive for the rotovirus, also known as the common cold. Although he has no symptoms, a nasal swab confirmed that he has a colonized virus, which may or may not turn into a full-blown cold. With the known side-effects he'll be facing post transplant, Kosta and Eleni are praying he won't have to also deal with congestion, cough and a runny nose, nor be faced with the risk of pneumonia.
Theo was full of energy when the medicine was hung a little after 10 am. He had already started his mouth care, finished his breakfast that he made himself, and even tackled a Lego set given to him by a little girl Ryan in his class. Dad stopped by to drop off some important items that were forgotten at home (i.e. coffee) and found Theo sucking on an orange popsicle. "It's medicine," Theo told him. Theo had to keep his mouth cold for an hour before chemo and for the 20 minutes of actual infusion of Melphalan. Apparently, swelling of the mouth can begin instantly. Because Theo can't have non-purified ice, he was given the choice of chewing on frozen gummy bears or popsicles. He tried the gummy bears but opted for the popsicles. After his 5th popsicle stick, he "complained" he couldn't eat any more!
Theo's chemotherapy on Day -7 were:
- Melphalan, 20 minute IV push
- Etoposide, 24 hour IV infusion
- Carboplatinum, 24 hour IV infusion
At about 3 pm, Theo announced he was bored. Although he completed a full lego set, made a snowman on skis with Jackie, the art therapist, watched TV, and played with games, he felt that he had nothing to do. His energy changed. Not even the offer to do homework livened him up. Child Life came running in with a Wii system, board games and movies to help cheer him up. He snacked throughout the day and ate decently, too. But, it was obvious that tiredness was setting in. And that's when it became ever apparent that the chemo was circulating through his body and it was affecting him. He complained that his central line and the dressing around it hurt, so much that he was in tears. And, he also had an unexplainable splotchy rash instantly appear and then disappear on his face and head. The nurse who witnessed it described it similar to a hot flash. The super cells Theo got back during Transplant #1 are not liking the chemo. And you can't blame them, either.
p.s. Theo sneezed six times today. Please, let's all pray he doesn't get a cold.
Friday, December 2, 2011
The Weeks Post Transplant #1
The dark days of transplant led to brighter days that once again proved how incredible this child is!
To all our wonderful friends and followers of Theofanis’ blog, we thank you for your continued support and prayers. We apologize for not having posted updates in several weeks, but be assured, Theofanis is doing great! His Super Cells are as incredible as Theo himself! Though, the ups and downs that we faced have led us to moments of complete emotional and physical exhaustion. Nearly seven months into this battle against cancer, we have learned to allow ourselves to seek rest and sleep. In other words, we crashed. –Eleni and Kosta
Post transplant: Day +1 through Day +7
They were difficult, dark, and frightening days. Kosta and Eleni felt helpless. Neutropenia set in and Theofanis spiked a fever. The doctors started the antibiotics, the antivirals, the antifungals, the anti-nauseas, the morphine, antiseptics, the colase, the lotions for his inflamed skin, the rinses for his blistering mouth, the stomach soothers for his shedding GI tract. The TPN (intravenous nutrition) was hung since he no longer could eat. The only thing that seemed to bring him comfort was “Mr. Thirsty” (coined by his dentist, Theio Pete) which he used to suction the saliva out of his mouth. His face swelled, his mouth was full of sores, his throat was flaming, his skin was rashed. His skin also itched from the morphine and his scratching didn’t stop until a new pain narcotic was prescribed. And when Kosta and Eleni watched Theo throw up an incredible amount of blood with the lining of his stomach, they could not imagine their son’s struggle being any worse.
And during this difficult time, he and his sisters missed each other desperately. They would video chat every day and read each other bedtime books each night via FaceTime. But it was hard for them. In a short video chat, the girls could sense and feel their brother’s battle.
Theo would say, “This is not fair. I want to go home. Having cancer is the worst thing.”
At home, Sophia would cry at night and say, “I miss Theofanis.”
Deme secretly wrote in the following answer to a question in a diary she had just bought at the school book fair: Q: Who is the one person in the world you would change places with? A: My brother. (Yes, mom peeked at her daughter’s diary, and she’s so glad that she did because she was reminded of how incredibly compassionate, caring and selfless her eight year old daughter is! And how much she loves her brother!)Each day Kosta and Eleni prayed that the current day would end and the next day would come quickly.
Post transplant: Day +8
Theofanis’ fever finally broke, and all the bacteria cultures continued to come back negative. His counts were still basically at zero, though. But there was a glimmer of light when the previous week’s redundant WBC results of <0.1 turned into 0.2!
Post transplant: Day +9
0.9! Theo’s white blood count was 0.9! And his absolute neutrophil count was 740! This was the definite sign that his stem cells engrafted! His beautiful, wonderful, powerful stem cells have “taken over”! And it showed. His doctors and nurses kept commenting that Theo looks great! Still filled with uncertainty, Eleni and Kosta kept seeking affirmation, “Really? Are you sure?” But then, late that night, Theo had a secret visit from a very special lady, Rene Pournaras, aka Yano’s mom. Rene has also lived this neuroblastoma nightmare and has continuously provided the Yianas family support, strength, advice and hope. Rene, who saw her son go through his own stem cell transplant, turned to Eleni and said, “He looks good.” Those three words from Rene finally re-assured Eleni. And when Rene blew up a latex glove to the size of a beach ball and tossed it to Theofanis, Eleni smiled at the sight of her son returning the toss with a huge grin on his face.
Post transplant: Day +10 through Day +14
The morning of Day +10, the door to Theofanis’ hospital room flung wide open and Dr. Cunningham appeared in the doorway with a HUGE smile on his face and announced, “Look, I have both doors open!” When the team of residents shuffled into Theofanis’ room, Eleni saw that the first door leading to the “outside world” was left open and Theofanis was exposed to regular non-hepa filtered air for the first time since his admission. Dr. Cunningham delivered the good news that his counts had recovered! His WBC was 2.2 and his ANC was 1100! Dr. Cunningham also suggested that Theofanis get moving. With a “94” respiratory mask, Theofanis took a stroll around the 6th floor of Comer! Smiles and waves came from all the nurses and staff who saw Theo out of bed for the first time in weeks!
So, the buzz of an early discharge rang in everyone’s ears! Theo’s mucositis was improving, his temperature was normal, his GI tract was stable, and as long as his counts continued to skyrocket, there was a good possibility that Theofanis could go home the next week, a full week earlier than expected. This was fantastic news!
Preparations for Theo’s discharge began both at Comer and at home. The doctors started to wean Theo off the pain meds. The IV meds were changed to oral meds. The home nurse was contacted. He had a few blood transfusions along the way, but nothing out of the ordinary. The cleaning crew was dispatched to the Yianas home. Every inch of their home was cleaned and sanitized. Every carpet fiber, every wall, all the ducts were cleaned. All the live plants were removed. UV air purifiers were installed, too. Admittedly, Eleni and Kosta felt a sense of nervousness about going home. They had to have everything perfect, everything clean, everything done to prevent their son’s delicate immune system from being exposed to anything that could compromise his recovery. “Are we going home too soon? The other transplant kids are still in the hospital.”
“Of COURSE he's being discharged early...he's Theo! Super Theo!” When Carrie Stotz, whose son Aidan has been victorious against this neuroblastoma beast, sent this to Eleni in an email, a feeling of re-assurance settled in. When the doctors would say, “He’s doing great…We’re thrilled with how he’s doing…He looks fantastic…” Eleni and Kosta would respond to them seeking affirmation, “Really…Are you sure?…What should we watch out for?....” But when Carrie reminded Eleni of how “SUPER”, their son is, it was a much needed reminder that Theo can do anything! And when he does something (consciously or subconsciously) he does it to the best of his ability, and he does it to win!
So the reality of a discharge date led to excitement for everyone. Eleni and Kosta started to pack up and take home the items that adorned Theo’s hospital room. From completed lego sets, toys, and books to all the cards and posters that covered his walls to the food in their make-shift pantry, slowly, Theo was moving out! And when Carly and John Saltis, whose son Stahi has just finished his treatment to knock out this neuroblastoma beast, dropped of a home-cooked meal for Kosta, timing could not have been better as the existing food supply dwindled.
Post transplant: Day +14 through Day +18
Theo was disconnected from his IV pole and discharged 14 days after his Stem Cell Transplant (aka Stem Cell Rescue). He was discharged on November 9th, the Fest Day of Saint Nectarios. Saint Nectarios is the saint and healer of cancer, and the Yianas’ have been praying to him to bestow a miracle upon their son for his cure. And on this day, an extra special thank you went out to Saint Nectarios for helping in Theo’s recovery to be discharged a whole week earlier than initially expected.
Theofanis was released to Ronald McDonald House. The transplant team insisted that Theo spend his first few days “out” at a location close to the hospital. According to the doctors, most problems arise within 24 hours of discharge. And because Palatine is well over 30 miles away from the University of Chicago hospitals, the transplant team made arrangements to get Theo situated at RMH. About two blocks away from Comer, Ronald McDonald House would be Theo’s temporary home. For the first few days, Kosta stayed with Theo. He had to learn the nerve-racking task of preparing and administering Theo’s TPN (IV nutrition). They mostly stayed in the room, so Kosta also had the task of preventing boredom from settling in. A clinic visit on Friday showed that Theo continued to recover nicely, but their hopes of being allowed to go home burst when the transplant team insisted Theo stay at RMH through the weekend. But all was not so bad…Theo was told that his sisters could stay with him at RMH! So, on Friday night, Eleni packed up the girls and headed to Hyde Park for the family’s much anticipated reunion.
It was a fantastic reunion filled with smiles and hugs! A few tears of joy were shed, too, as you can imagine.
Ronald McDonald House is like a hotel, but with a communal kitchen. The rooms are simple with beds and a bathroom. No TV, though, which was tough. Theofanis’ room was on the third floor and near the “lounge” which had a TV. But, he could only be there if others weren’t. The workers and volunteers were nice. There were families there from all walks of life and cultures. Groups would come in at each meal to prepare food for the patient families. Because Theo is on very strict dietary restrictions, the Yianas’ had to cook their own meals. Theo wore his mask when he left the room. And even in the room, Kosta and Eleni would only allow Theo to use linens and blankets they brought from home. It was fairly clean (you had to clean the room yourself) but in no way was it nearly as clean as the Yianas home.
Post transplant: Day +19 through today
When the weekend finally came to an end, Theo returned to the Hospital Clinic for labs and check-up. He got another “thumbs up” and Dr. Cunningham gave him the official OK to go HOME! Good thing because Kosta and Eleni already had packed up the car and checked out of RMH. (They were going home no matter what!) They also got the ok to start cutting back on Theo’s TPN because over the weekend, Theo started eating…real food!
So, on Day +19, Theo and his family finally went home! And since that day, Theo’s been happy! His sisters have been happy! And, his parents are happy that Theo is recovering well. And everyone is thrilled beyond words that their family is together!
So, what’s been going on since he’s been home? He’s been feeling fantastic! TPN was cut completely within the week, his Clinic Visits were cut from 2 to 1 a week, and he’s totally off the pepcid and anti-nausea meds. Theo is technically in isolation, so he has very little interaction with others. He was able to begin meeting with his home tutor, though. And, he actually is enjoying his “school time” at home. Kosta and Eleni are making every effort to keep Deme and Sophia as healthy as possible. But, there were a couple of scares last week when Deme had a sore throat and stuffy nose and Sophia threw up one night. Panic set in for Kosta and Eleni and extra precautions were in effect. Even Kosta and Eleni were feeling run down and not 100%. But, Theo managed to ward off any germs. (Remember, those super cells really are super!)
The Yianas’ also spent a very quiet and relaxing Thanksgiving at home. Their cooking restrictions made preparing dinner a bit more challenging this year, but at the end, everyone enjoyed their Thanksgiving meal. (Well, except for the canned ham. It was simply terrible!) But, the best part of the holiday was that they were all together. The Yianas Family has a lot to be thankful for! Family, friends (new and old), their doctors, their church, and the prayers coming in from all over the world, are just a few of the blessings that they are immensely thankful for. And as Thanksgiving came to an end, the Yianas family tradition of Christmas preparations began. Every year on the day after Thanksgiving, the whole family decorates for the holidays. They decorate their tree. (This year, though a real tree is against transplant rules.) They set up the holiday lights, they hang the stockings and all the garland. Admittedly, Kosta and Eleni talked about keeping Christmas “low key” this year, but they reverted back to keeping tradition and keeping things as normal as possible. So, the house is ready for the holidays and the letters to Santa are written and mailed. And although the kids realize that there’s a very good chance that they will not be together on Christmas, they are focusing on the moments now and immensely enjoying the time they are spending together.
What this Stem Cell Transplant has taught us about Theofanis
Everyone who has ever met Theofanis knows that he is a very respectful child. And, if you remember, one of the first things that you read about him on this blog is that he likes to win. And at no time more apparent than during this transplant, these two qualities that are innate in him became obvious to his parents. The best way to describe Theofanis is that he is respectfully competitive. And that’s exactly how he’s been fighting this Neuroblastoma beast. Neuroblastoma is his competitor. He is fighting it with determination, grace and tolerance. The strength of his mind, the strength of his body, the encouraging cheers from his supporters and teammates, powered by prayer, are the tools he uses to compete against it. And when he finally defeats this cancer, he will instinctively raise his arms in victory, most likely not say a word, shake it’s hand for a final “goodbye”, and he will move on.
WITH LOVE, FAITH AND PRAYER, HE WILL WIN!
Theofanis will be admitted to the hospital on Tuesday, December 6th to begin his second stem cell transplant. December 6th is the feast day of Saint Nicholas. Please pray to this great saint to protect him once again as he goes through another round of high dose chemotherapy, another stem cell rescue, and weeks of recovery. Please pray that his body fights hard, that he wards off side-effects, and his super cells come back quickly. Please pray that his physical and emotional pain is minimal. And please pray that through a miracle, Theofanis may somehow be allowed to see his sisters on Christmas Day, which is also his 7th birthday.
To all our wonderful friends and followers of Theofanis’ blog, we thank you for your continued support and prayers. We apologize for not having posted updates in several weeks, but be assured, Theofanis is doing great! His Super Cells are as incredible as Theo himself! Though, the ups and downs that we faced have led us to moments of complete emotional and physical exhaustion. Nearly seven months into this battle against cancer, we have learned to allow ourselves to seek rest and sleep. In other words, we crashed. –Eleni and Kosta
Post transplant: Day +1 through Day +7
They were difficult, dark, and frightening days. Kosta and Eleni felt helpless. Neutropenia set in and Theofanis spiked a fever. The doctors started the antibiotics, the antivirals, the antifungals, the anti-nauseas, the morphine, antiseptics, the colase, the lotions for his inflamed skin, the rinses for his blistering mouth, the stomach soothers for his shedding GI tract. The TPN (intravenous nutrition) was hung since he no longer could eat. The only thing that seemed to bring him comfort was “Mr. Thirsty” (coined by his dentist, Theio Pete) which he used to suction the saliva out of his mouth. His face swelled, his mouth was full of sores, his throat was flaming, his skin was rashed. His skin also itched from the morphine and his scratching didn’t stop until a new pain narcotic was prescribed. And when Kosta and Eleni watched Theo throw up an incredible amount of blood with the lining of his stomach, they could not imagine their son’s struggle being any worse.
And during this difficult time, he and his sisters missed each other desperately. They would video chat every day and read each other bedtime books each night via FaceTime. But it was hard for them. In a short video chat, the girls could sense and feel their brother’s battle.
Theo would say, “This is not fair. I want to go home. Having cancer is the worst thing.”
At home, Sophia would cry at night and say, “I miss Theofanis.”
Deme secretly wrote in the following answer to a question in a diary she had just bought at the school book fair: Q: Who is the one person in the world you would change places with? A: My brother. (Yes, mom peeked at her daughter’s diary, and she’s so glad that she did because she was reminded of how incredibly compassionate, caring and selfless her eight year old daughter is! And how much she loves her brother!)
Post transplant: Day +8
Theofanis’ fever finally broke, and all the bacteria cultures continued to come back negative. His counts were still basically at zero, though. But there was a glimmer of light when the previous week’s redundant WBC results of <0.1 turned into 0.2!
Post transplant: Day +9
0.9! Theo’s white blood count was 0.9! And his absolute neutrophil count was 740! This was the definite sign that his stem cells engrafted! His beautiful, wonderful, powerful stem cells have “taken over”! And it showed. His doctors and nurses kept commenting that Theo looks great! Still filled with uncertainty, Eleni and Kosta kept seeking affirmation, “Really? Are you sure?” But then, late that night, Theo had a secret visit from a very special lady, Rene Pournaras, aka Yano’s mom. Rene has also lived this neuroblastoma nightmare and has continuously provided the Yianas family support, strength, advice and hope. Rene, who saw her son go through his own stem cell transplant, turned to Eleni and said, “He looks good.” Those three words from Rene finally re-assured Eleni. And when Rene blew up a latex glove to the size of a beach ball and tossed it to Theofanis, Eleni smiled at the sight of her son returning the toss with a huge grin on his face.
Post transplant: Day +10 through Day +14
The morning of Day +10, the door to Theofanis’ hospital room flung wide open and Dr. Cunningham appeared in the doorway with a HUGE smile on his face and announced, “Look, I have both doors open!” When the team of residents shuffled into Theofanis’ room, Eleni saw that the first door leading to the “outside world” was left open and Theofanis was exposed to regular non-hepa filtered air for the first time since his admission. Dr. Cunningham delivered the good news that his counts had recovered! His WBC was 2.2 and his ANC was 1100! Dr. Cunningham also suggested that Theofanis get moving. With a “94” respiratory mask, Theofanis took a stroll around the 6th floor of Comer! Smiles and waves came from all the nurses and staff who saw Theo out of bed for the first time in weeks!
So, the buzz of an early discharge rang in everyone’s ears! Theo’s mucositis was improving, his temperature was normal, his GI tract was stable, and as long as his counts continued to skyrocket, there was a good possibility that Theofanis could go home the next week, a full week earlier than expected. This was fantastic news!
Preparations for Theo’s discharge began both at Comer and at home. The doctors started to wean Theo off the pain meds. The IV meds were changed to oral meds. The home nurse was contacted. He had a few blood transfusions along the way, but nothing out of the ordinary. The cleaning crew was dispatched to the Yianas home. Every inch of their home was cleaned and sanitized. Every carpet fiber, every wall, all the ducts were cleaned. All the live plants were removed. UV air purifiers were installed, too. Admittedly, Eleni and Kosta felt a sense of nervousness about going home. They had to have everything perfect, everything clean, everything done to prevent their son’s delicate immune system from being exposed to anything that could compromise his recovery. “Are we going home too soon? The other transplant kids are still in the hospital.”
“Of COURSE he's being discharged early...he's Theo! Super Theo!” When Carrie Stotz, whose son Aidan has been victorious against this neuroblastoma beast, sent this to Eleni in an email, a feeling of re-assurance settled in. When the doctors would say, “He’s doing great…We’re thrilled with how he’s doing…He looks fantastic…” Eleni and Kosta would respond to them seeking affirmation, “Really…Are you sure?…What should we watch out for?....” But when Carrie reminded Eleni of how “SUPER”, their son is, it was a much needed reminder that Theo can do anything! And when he does something (consciously or subconsciously) he does it to the best of his ability, and he does it to win!
So the reality of a discharge date led to excitement for everyone. Eleni and Kosta started to pack up and take home the items that adorned Theo’s hospital room. From completed lego sets, toys, and books to all the cards and posters that covered his walls to the food in their make-shift pantry, slowly, Theo was moving out! And when Carly and John Saltis, whose son Stahi has just finished his treatment to knock out this neuroblastoma beast, dropped of a home-cooked meal for Kosta, timing could not have been better as the existing food supply dwindled.
Post transplant: Day +14 through Day +18
Theo was disconnected from his IV pole and discharged 14 days after his Stem Cell Transplant (aka Stem Cell Rescue). He was discharged on November 9th, the Fest Day of Saint Nectarios. Saint Nectarios is the saint and healer of cancer, and the Yianas’ have been praying to him to bestow a miracle upon their son for his cure. And on this day, an extra special thank you went out to Saint Nectarios for helping in Theo’s recovery to be discharged a whole week earlier than initially expected.
Theofanis was released to Ronald McDonald House. The transplant team insisted that Theo spend his first few days “out” at a location close to the hospital. According to the doctors, most problems arise within 24 hours of discharge. And because Palatine is well over 30 miles away from the University of Chicago hospitals, the transplant team made arrangements to get Theo situated at RMH. About two blocks away from Comer, Ronald McDonald House would be Theo’s temporary home. For the first few days, Kosta stayed with Theo. He had to learn the nerve-racking task of preparing and administering Theo’s TPN (IV nutrition). They mostly stayed in the room, so Kosta also had the task of preventing boredom from settling in. A clinic visit on Friday showed that Theo continued to recover nicely, but their hopes of being allowed to go home burst when the transplant team insisted Theo stay at RMH through the weekend. But all was not so bad…Theo was told that his sisters could stay with him at RMH! So, on Friday night, Eleni packed up the girls and headed to Hyde Park for the family’s much anticipated reunion.
It was a fantastic reunion filled with smiles and hugs! A few tears of joy were shed, too, as you can imagine.
Ronald McDonald House is like a hotel, but with a communal kitchen. The rooms are simple with beds and a bathroom. No TV, though, which was tough. Theofanis’ room was on the third floor and near the “lounge” which had a TV. But, he could only be there if others weren’t. The workers and volunteers were nice. There were families there from all walks of life and cultures. Groups would come in at each meal to prepare food for the patient families. Because Theo is on very strict dietary restrictions, the Yianas’ had to cook their own meals. Theo wore his mask when he left the room. And even in the room, Kosta and Eleni would only allow Theo to use linens and blankets they brought from home. It was fairly clean (you had to clean the room yourself) but in no way was it nearly as clean as the Yianas home.
Post transplant: Day +19 through today
When the weekend finally came to an end, Theo returned to the Hospital Clinic for labs and check-up. He got another “thumbs up” and Dr. Cunningham gave him the official OK to go HOME! Good thing because Kosta and Eleni already had packed up the car and checked out of RMH. (They were going home no matter what!) They also got the ok to start cutting back on Theo’s TPN because over the weekend, Theo started eating…real food!
So, on Day +19, Theo and his family finally went home! And since that day, Theo’s been happy! His sisters have been happy! And, his parents are happy that Theo is recovering well. And everyone is thrilled beyond words that their family is together!
So, what’s been going on since he’s been home? He’s been feeling fantastic! TPN was cut completely within the week, his Clinic Visits were cut from 2 to 1 a week, and he’s totally off the pepcid and anti-nausea meds. Theo is technically in isolation, so he has very little interaction with others. He was able to begin meeting with his home tutor, though. And, he actually is enjoying his “school time” at home. Kosta and Eleni are making every effort to keep Deme and Sophia as healthy as possible. But, there were a couple of scares last week when Deme had a sore throat and stuffy nose and Sophia threw up one night. Panic set in for Kosta and Eleni and extra precautions were in effect. Even Kosta and Eleni were feeling run down and not 100%. But, Theo managed to ward off any germs. (Remember, those super cells really are super!) The Yianas’ also spent a very quiet and relaxing Thanksgiving at home. Their cooking restrictions made preparing dinner a bit more challenging this year, but at the end, everyone enjoyed their Thanksgiving meal. (Well, except for the canned ham. It was simply terrible!) But, the best part of the holiday was that they were all together. The Yianas Family has a lot to be thankful for! Family, friends (new and old), their doctors, their church, and the prayers coming in from all over the world, are just a few of the blessings that they are immensely thankful for. And as Thanksgiving came to an end, the Yianas family tradition of Christmas preparations began. Every year on the day after Thanksgiving, the whole family decorates for the holidays. They decorate their tree. (This year, though a real tree is against transplant rules.) They set up the holiday lights, they hang the stockings and all the garland. Admittedly, Kosta and Eleni talked about keeping Christmas “low key” this year, but they reverted back to keeping tradition and keeping things as normal as possible. So, the house is ready for the holidays and the letters to Santa are written and mailed. And although the kids realize that there’s a very good chance that they will not be together on Christmas, they are focusing on the moments now and immensely enjoying the time they are spending together.
What this Stem Cell Transplant has taught us about Theofanis
Everyone who has ever met Theofanis knows that he is a very respectful child. And, if you remember, one of the first things that you read about him on this blog is that he likes to win. And at no time more apparent than during this transplant, these two qualities that are innate in him became obvious to his parents. The best way to describe Theofanis is that he is respectfully competitive. And that’s exactly how he’s been fighting this Neuroblastoma beast. Neuroblastoma is his competitor. He is fighting it with determination, grace and tolerance. The strength of his mind, the strength of his body, the encouraging cheers from his supporters and teammates, powered by prayer, are the tools he uses to compete against it. And when he finally defeats this cancer, he will instinctively raise his arms in victory, most likely not say a word, shake it’s hand for a final “goodbye”, and he will move on.
WITH LOVE, FAITH AND PRAYER, HE WILL WIN!
Theofanis will be admitted to the hospital on Tuesday, December 6th to begin his second stem cell transplant. December 6th is the feast day of Saint Nicholas. Please pray to this great saint to protect him once again as he goes through another round of high dose chemotherapy, another stem cell rescue, and weeks of recovery. Please pray that his body fights hard, that he wards off side-effects, and his super cells come back quickly. Please pray that his physical and emotional pain is minimal. And please pray that through a miracle, Theofanis may somehow be allowed to see his sisters on Christmas Day, which is also his 7th birthday.
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